Anosognosia - Does it ever go away?

LindaLouise

So - my DH was diagnosed a year and half ago with moderate dementia - based on a MoCa score of 13/30. He has always had anosognosia and never thought there was anything wrong or amiss. Suddenly this weekend, he has been in tears twice saying that he wants to be part of the family and that he wants to be like everyone else and he can't do what everyone else is doing. For the record, he attends every family event with me and often retreats upstairs when the grandkids visit. So - is anosognosia going away and he now realizes what is going on? Anyone else experience this change. It is really heartbreaking to hear…

PookieBlue

Linda Louise,

Not that I have any answers, but there are times when my DH seems to have a realization that something is wrong. When he sobs it breaks my heart. I feel helpless so can only hug him. These are the hardest times for me. They are very, very infrequent as most of the time he is just lost in some unknown world which changes relentlessly. I think with the anosognosia he thinks he can still do everything he’s always done. He doesn’t realize that I am doing everything and he does little to nothing. It is exhausting.

LaneyG

I’ve wondered the same thing. DH also has commented that his brain doesn’t work anymore and that he is stupid and wants to die. And I get the feeling that deep down he knows he is not well even when he doesn’t say anything. But minutes later an incident will occur and he’ll make statements that remind me that the anosognisia is still ever so present.

LindaLouise

It is so very, very sad - I've never seen him cry like that before, and saying that he wishes he was like everyone else but he isn't - I thought he would be spared realizing that due to the anosognosia but I guess that isn't to be the case. It was somewhat fleeting - very intense for about 30 minutes, but I'm pretty sure its all forgotten by him now - but not by me…this disease holds all of us spouses/caregivers in its grasp.

Whyzit2

LindaLouise you mentioned that DH retreats upstairs when the grandkids visit. It is possible these visits and family events are becoming more than he can handle. Too much activity, noise and multiple people conversing often are more than one with ALZ can process. I noticed this with my DH. He cannot multitask and in group settings that skill is required. He can only handle one conversation at a time, slow, without interruption and easy.

Best wishes

Drapper

my husband also has anosognosia. He does have moments where he tells me he doesn't know who he is. He will get concerned but it does pass. I usually give him a hug.

My DH loves our grandson to visit although he interacts very little with him, when he is there. He does like to watch cartoons with him. I think just being near him brings him happiness. Sometimes he just wants to be invited to sit with us on couch. Maybe you could try inviting him “in” when he retreats.

LindaLouise

https://alzconnected.org/discussion/comment/208312#Comment_208312

That's an excellent idea. The retreating may happen because he can't remember how to engage - I like the idea of reaching out and see if that can help. Thank you!

Lkrielow99

my DH has had a few moments lately that lead me to believe he is aware, at least for a moment. I’ve noticed it’s when our day is calm, or I think it’s calm. It’s just a fleeting moment. Something he says makes me believe he deep down knows something is wrong. He came to me with an old bottle of Prevagen and ask if I thought it would help him. He has once or twice mentioned his confusion. He gets emails about memory and will ask me about whatever snake oil they are selling. As I said they are fleeting moments and then back to his same delusions that he has clients and is working. He gets scammed and our cards get compromised, he yells that he needs those cards for his clients. I just go with it, unless it will harm him or our finances. Hugs to you, this is a terrible disease.

trottingalong

my DH will often tell me he feels stupid, his brain isn’t working or he’s very confused. He will sometimes say he thinks he has what his mother had (Alzheimer’s). But other times he will ask me if I think he has Alzheimer’s or he will say he’s glad he doesn’t have it. He will also ask me if he’s getting worse. Then other times he’s completely oblivious.

l7pla1w2

https://alzconnected.org/discussion/comment/208430#Comment_208430

My DW also sometimes she says her brain isn't working right and asks what's the matter with her. But she would never accept my telling her that she is sick and has dementia.

3164too

My DH was diagnosed with Alzheimer's in 2019, he still thinks there is nothing wrong with him and that he can do everything he has always done. he Can not drive, cook or do any of the things he used to do.

ronda b

My dh thinks the same way. Can't get him to stop driving. Do have 360 on his phone which has helped alot. I can see where he is at all times.

MelissaNH

https://alzconnected.org/discussion/69126/anosognosia-does-it-ever-go-away

((( @LindaLouise ))) I'm so, so sorry. That is heartbreaking. My DH56 (FTD) has anosognosia and it's real challenge. I was listening to some lectures last night to try and find understanding and help for dealing with this and in one that I listened to, the speaker said some patients may go in and out of that state depending on how the disease is affecting that part of the brain. It immediately resonated with me and some of the experiences I've had with DH where I feel like I get a flicker of "him" for just a short while. It doesn't happen very often, but it sure is confusing.

dancsfo

I feel that losing anosognosia has two sides.

• On one hand, it's very sad to see a PWD cry with a self-realization of a decline.
• On the other hand, it's a relief to see a PWD voluntarily relinquish some tasks to a caregiver, and avoids disagreements on that.

Perhaps a cognitive decline has become severe enough for a PWD to have self-realization. I think quiet acceptance is a reasonable situation (i.e. since we don't see sadness - not much crying), although it may indicate further decline.

subversivevegan

I'll never forget when my LO with VD told me "I can't think the way you do". It was heartbreaking, but also showed that she still had (at times) insight. It was better for her when she didn't "know".

Chloe mom

Hi

So comments in this thread are hitting home right now. But I need clarification. At what stage or point do you feel your SO is when you start noticing cognitive issues such as it is hard for them to talk to others, avoiding large groups, saying his brain isn’t working, not able to form sentences, brain fog and can’t remember conversations. Thankfully my DH doesn’t have anosognosia, we know well what the main problem is. But sometimes his brain is on for a number of days and other days he complains about it. I noticed a major decline after a heart attack in Aug of 2022. I guess I am wondering if we are going from stage 4 to stage 5 slowly and this is our new normal.

Thanks

michflo34

https://alzconnected.org/discussion/69126/anosognosia-does-it-ever-go-away

michflo34

Bonjour Linda Louise ! je vis un peu cela! quand mon aidant veux trop m'aider cela devient une surchrge pour moi, et aussi quand j'ai fait trop de choses dans la journée, je ne souviens plus de rien, je me retire dans ma chambre ou jed vais à l'église pour pleurer ! j'ai 77 ans, et j'ai peur pour la suite ! amicalement : Michel34

GothicGremlin

@Chloe mom - I think it's different for everyone. For my sister, I'd say it was right around the beginning of stage 5. There were other things that led to her diagnosis, and I think we got that at around earlier stage 4. It's so hard to pinpoint sometimes …

@LindaLouise - I'm so sorry the two of you are going through this. I know how this feels. My sister Peggy would often tell me that she just "wanted to be a person again." I thought she meant that someone was making her feel bad about herself, but then I realized it was that she wanted to be her old self again - have lunch with her friends, go to Disneyland, etc. It was so very painful to hear.

Anosognosia is strange. Peggy knew she had Alzheimer's in the beginning, but once she hit around stage 6, the anosognosia kicked in. She still knew something was wrong - she would occasionally tell me "sometimes I can't do anything", but she didn't realize it was Alzheimer's.

sandwichone123

My dh in stage 4 knew there was a problem, and when he was diagnosed he knew the diagnosis. As he headed to stage 5 he did not know the diagnosis, and his deficits were less noticeable to him. He could still read, and there was a billboard that said, "It's time to talk about Alzheimer's." Every time we passed that one he'd say, "boy, I wouldn't want to end up like that."

Later, firmly in stage 5, he overheard a caregiver saying he had Alzheimer's and was very upset by that.